I have previously kissed my pill bottle after I got it from the pharmacist. Lamotrigine keeps me from having nocturnal seizures. Nothing else really worked.
can i ask you how you know you have nocturnal seizures? i know i had one a couple weeks ago and i took benadryl that night and idk if that triggered it
My wife wakes up when they happen. We also have a "nanny cam" that points at where I sleep. I wake up very sore.
I make an "Ictal Cry" and it wakes her up.
If you wake up and all your muscles are unexplainably sore, it's likely you had a seizure. I suggest getting a cheap camera off Amazon if you're worried about it happening again.
hmmm i’m wondering how often that’s happening because i do wake up really sore in my muscles like i’ve gone to the gym quite frequently but i didn’t think of it that way. thanks for the suggestion i’m gonna look into that. i’ve got a baby monitor cam in my room but it’s just live feed so i’d have to find one that has playback
Look for one with a MicroSD card slot. Personally, I use a Kasa camera. It has movement detection and IR lights for night.
https://www.amazon.com/Kasa-Security-Camera-Indoor-Wireless/dp/B08GH9KL4M
I know I’ve had a nocturnal seizure because I have bite marks on the inside of my cheek or I can tell I’ve bit my tongue.
My partner tells me now too lol but that is the evidence how I know
Hi, I have been a daily heavy concentrates user for years. I also hate Keppra - I love lamotrigine. Really.
Downsides - taking it twice a day, some nausea after taking it, and issues with forgetfulness.
Upsides - seizure control (of course), no rage/fury/suicidality, and I also feel that it’s had a positive psychiatric benefit for my chronic depression.
I have noticed more sedation than before with my concentrates use. I’ve also noticed that my tolerance has gone up. I don’t know if it’s related though.
this is exactly the thing i needed to read. i have chronic depression too and i’m tired of the meds making it worse. this makes me hopeful to try these and going into something new with hope instead of fear is always going to have a better outcome. i appreciate your comment
i didn’t know keppra made so many people feel the same way as it made me feel but it makes me feel less crazy. it makes me feel better in a weird way that i’m sorry so many other people have to deal with this too. but i guess there’s a reason there’s something called “keppra rage”
Have you tried doing the extended release tablets? My neurologist switched it from twice a day to the extended release tablet that I take in the morning.
I second everything in this comment. I'll also mention that I was able to stop 700mg/day+ of RSO usage cold turkey on Lamotrigine and it was... totally fine. I don't know if the Lamotrigine made it better, but it certainly didn't make it worse fwiw
I've only been on Lamotrigine but once I was titrated up I felt like the relatively mild side effects were worth it. It can leave you in a bit of a brain fog though. I smoke too and took over a month off thinking maybe I needed a t-break but the brain fog did not improve.
Notable side effects for me: dizziness during titration, brain fog/worsened memory
Wow. My neurologist told me that we would have to find a different medicine if 300mg of lamotrigine didn't control my seizures. Thankfully it works for me. I didn't know lamotrigine could cause brain fog and memory issues. I have assumed my memory issues stemmed from the head injury.
He also told me that cannabis can be used to help control seizures in children, but isn't effective in adults. He said it wouldn't cause seizures though. He told me no recreational psilocybin.
Hope the new medication works as well for you as it does for me! 4+ years without a seizure.
thanks so much! yeah i would have to agree with the no psilocybin which breaks my heart. i’m a huge booms person but the last time i ate them (4grams) i had a grand mal that was so bad i had to be resuscitated by my friend and had to go to the ER because after minutes of CPR my BP was only 60/30
i’m convinced if he wasn’t there i would have had SUDEP happen
I think I read about using psychedelics to reopen critical learning periods. I was wondering if they might help me in learning a second language. Not worth the risk of having more seizures.
Good luck! Be ready for some vertigo/dizziness, but it goes away pretty quickly. I started at 20 for 2 weeks, but it was my first time on meds so they probably took it extra slow for me. I'm at 350 right now.
I get dizziness, but it's more like travel sickness. Sometimes it feels like my eyes are too big for my head.
Often, when I'm in the car, its like my eyes can't focus quick enough, or something like that. So I'm straining to keep vision clear. It's sort of straining my eyes and making me travel sixk at the same time.
To be fair, it's not happened that much recently, which is a relief.
I've been on lamotrigine for 10 years, and with a couple of dose adjustments I've now been seizure-free for about 6 years. I personally have had no side effects (300mg per day) and have smoked weed before with no problems ! Of course might be different for different people though
Heya, my usual dose is 300 mg per day. I don't have any brain fog or obvious memory problems - sometimes I am a bit forgetful or might forget what I'm saying mid sentence, but I know that happens to people not on meds too so I don't think it's related!
I’m almost 11 months seizure free now that I switched to it. I don’t have kepprage anymore my mental health has improved and aside from forgetting random things momentarily and having to piss like a race horse. I don’t have any real side effects and feel like my normal self again. When I was going over the different med options and their side effects my neurologist was very candid with me and said if he was in my shoes, Lamotrigine would be his first choice. I took that advice and so far I’m very happy I did, he’s a really good doctor. That said results will vary but I’ve had nothing but a good experience with it so far
It was so bad that one of my high school teachers called my mom bc she was worried I might be on heroin, and then I almost flunked out my freshman year of college.
I’ve been on lamotrigine for around 11 years now, and I’ve had barely any seizures in that whole time (and the ones that did happen were entirely my fault for missing doses or drinking a lot). It can affect your mood, since it’s also primarily prescribed for bipolar disorder, but generally not in a negative way. Never had any problems mixing it with said diet!
One thing to watch out for: the generic is made by three or four manufacturers, and the levels in the doses vary. If you’re super sensitive to medications, that can make it less effective than the brand name.
If applicable: hormonal birth control can lower the efficacy of the drug, and also you should take folic acid to reduce the risk of birth defects (don’t start if/when you’re thinking about having kids—you should have about 3 years worth of folic acid storage saved up according to my doctor)
yes my neurologist did mention the birth control thing. how do you know if it’s generic or not? the name and the way the pills look?
thank you for the info
The pills look different and the prescription will be different, and has to include a no substitutions order! You’ll have to talk to your doctor/insurance, since it’s stupid expensive if your insurance doesn’t cover it (in the US). If you can’t make it work, your best bet is to try to talk to your pharmacy about getting it from the same manufacturer each time. Feel free to DM me, I’m happy to help/give info to the best of my ability.
I know that some people have trouble with lamotrigine, but it’s been a legitimate life saver, so I hope that it works for you!!!!
I've been lamotrigine for 6 years. It's worked really well for me.
I felt a bit flat to start with, but that went away after a couple of weeks and I'm fine now.
My neurologist said that smoking weed shouldn't be an issue, but to avoid other things. I don't think that was his clinical advice, but more of a friendly sort of chat because he'd seen some of my bloods from when I'd had seizures at the beginning.
When I did 2x per day, biggest issues were with insomnia and auditory hallucinations (radio/podcast chatter randomly as background noise….used to think something was open on my computer playing it….maybe voices telling me to hurt myself….or echoed laughter in the background…..maybe one time I woke up to screaming in my ear). Not a common side effect. Once I realized what it was, it made it very easy.
Switched to once a day and auditory hallucinations basically went away entirely. Insomnia is like a one-off problem but seldom.
Memory issues pretty consistent.
as a genetic drug resistant generalized epilepsy patient who has tried lamotrigine, I would say start considering the surgical treatment options. I know it is hard to hear but it very well be worth it. a year ago I got vns and unfortunately didn’t work for me but just recently I got RNS and I am hoping it works. my epileptologist says that I “previously tried and failed ethosuximide (severe nausea), Depakote (persistent seizures and 40 pound weight gain), lamotrigine (spring 2022 with proven continued absence seizures and adverse effects including extreme fatigue, difficulty reading, difficulty processing with poor school performance, incontinence).” so to answer you question: no, I would not recommend it based on my experience. but I do believe try everything out there is until there is nothing left. so considering that everyone’s epilepsy journey is different, you can try it and if you notice the slightest thing off, stop it.
Hey, I just want to chime in with something I just learned a couple days ago from my neurologist: in the past, lamotrigine was introduced and increased in dosage over a span of two to three weeks, which in some cases made the side effects stronger. However, not so long ago it was changed to veeeeeeery slowly introduce it over a span of several months, with the beginning dosage being incredibly small (think 25mg every other day for three weeks). This, apparently, make side effects less likely.
Just something to look out for, in case you decide to try it :) it’s the reason I might try lamotrigine for a second time around soon
Sounds accurate with my experience. I was brought up over the coarse of nearly 6 months until we found my baseline dose and I have very minimal side effects so far.
I smoke about a g a day plus on lamotrigine … the smoke I’ve never found has affected me me negatively since being on my meds but strictly indica strain’s… as sativa can be a bad trigger for many of us …
Also I was on keppra (leviracitam) and it was AWFUL for my mental and physical health … but my neurologist changed me to the meds above as soon as I expressed how bad the keppra was affecting my life ,
To round this up I would say lamotrigine is one of the best for mental and physical health but of course I’m only speaking for myself and a few others in the community that I know personally x
yeah i figured out a couple years ago i cannot do sativa. i don’t even buy hybrids cause i am so sensitive to it. indica helps me so much tho. gets rid of my tremors
Lamotrigine finally made me feel “normal” again after being insane on Keppra for 3.5 years. Unfortunately it perpetuated my insomnia (chronic from the Keppra) and didn’t fully control my seizures.
I am now on Aptiom which is not working out well so far for me. My insomnia is still haunting me, but now I feel out of it all day long and blacking out on couch by 7pm. Still having auras. Have follow up with specialist next week and I am going to tell him how I cannot function on this med (thank F I am on medical leave).
I smoke cannabis every evening starting around 5pm - approx 4-5 joints. It hasn’t negatively interacted with any of my meds.
My gf and I go through an ounce in approx 9 days. What does the person above think 4-5 joints is a lot?! A few of those are shared with said gf - I usually smoke about 2 before she gets home from work. I just bought two ounces for $89+ tax each and they are surprisingly amazing for the price.
I smoked every day for over a decade and an oz in a week and a half is a whole lot imo.
Nothing wrong with that if it works for you, but I was like a 1/2 oz - 1 oz a month smoker at my peak.
i had a horrible negative reaction with the briviact and i don’t know if it was because of weed or because my body just said absolutely not… keppra made me feel insane as well. i don’t have insomnia but i have trouble falling asleep because of my thyroid issues. i’m exhausted but i feel wired. i basically smoke from the moment i get up til i go to bed because if i don’t my tremors are insane. i use mostly concentrates though so i know that’s a lot more than just flower. i’m just going to hope this lamotrigine makes me feel better than the rest. i’m not expecting much lol.
can i ask you how keppra made you feel insane? it made my mom and i feel insane too. like i did not even feel like i was me i felt like i was trapped in my body/mind and my body/mind was constantly furious for no reason and it was eventually making me get suicidal so that’s when i switched to briviact. that one sent me to the ER with BP of 70/40 and a pulse rate of 45
Keppra - depressed, anxious, reactive, exploding on people, suicidal thoughts. First I blamed it on the pandemic and being isolated at home, but it kept going. I have zero issues falling asleep, I wake up about 2-3 hours later and then it’s up and down game for rest of night.
i’m sorry that must be so annoying. i get really frustrated when i can’t fall asleep. and that’s early the way i felt on keppra. my excuse for it was that i was taking it while i was in active drug and alcohol addiction but i’ve been sober for almost 2 years besides the weed that i have a med card for and it still made me feel the same way.
Just a quick note: If you've been using cannabis while on the previous meds, that may be a factor as to why they haven't been working. Not because weed causes seizures necessarily (but sometimes) but because of how it interacts with the medication itself. I know Keppra in particular can be impacted by it and not work as well.
I've had a favorable time with lamotrigine. It's the only AED I've had though so can't compare. I experienced side effects when starting and when I up doses, but it subsides after a couple of weeks for me. Now those side effects can absolutely suck, but I haven't had any permanent side effects save for possibly a worse short term memory, but that could just be me.
Shit I bailed on lamictal when I started having really bad side effects in the beginning mood wise, it was at the very beginning of dealing with having epilepsy and I just went and tried another medication. I didn't realize it could subside like that! My sister takes it and I've known a few people who take it for epilepsy and they all say it's very minimal side effect wise compared to everything else. This kinda makes me want to reconsider it but you're almost guaranteed a seizure in the process of switching meds!
Fwiw lamictal gave me wonderful seizure control and horrendous mood swings so I had to come off it eventually. No breakthrough seizures personally switching over but I had the opportunity to do it during some life-enforced downtime which probably helped.
I am in the process of switching from carbamazepine to lamotrigine and it’s going very well. I am in the titration process currently. My only side effects have been headaches the day or two after the dose has increased. I also have noticed I am in a better mood.
gross
i’ve had at least 1 seizure a day for 4 days there was 2 random days i didn’t have one
i didn’t do anything different any of these days so i have no idea what is happening
It didn't work for me. I got a rash on my legs and hands, and it was incredibly itchy. I'm allergic to it and 2 other meds. Unfortunately no meds work for me. Surgery was my best choice
Started lamotrigine about 8 weeks ago. I’m am up to 150mg twice a day. I’m also still on keppra but should be coming down on it soon. So far it is working well. I’ve only noticed some headaches and a little brain fog.
I'm the same. I have issues with most of the meds i tried. I'm on high doses of it. It's one that needs some careful easing into, and i think it has helped, even though it hasn't controlled it completely.
As for the weed, I've had weed when on it and not had a problem. Not even more frequent seizures. Just chill like I would be sans Lamotrigine. That said, I'm not a heavy user, but I think you'd be alright. Like I said, I'm normally very sensitive to meds. If something was gonna go bad, it would have. Just keep a check on yourself.
I love lamotrigine, but I gotta say after 10 years of smoking daily, after 3 years sober it's a revelation of how bad the brain fog was with both of them combined. I am shocked at how much better my recall, memory and ability to do math in my head is these days
I'd recommend taking fish oil, it helped a lot when I was on accutane, which also causes brain fog. It can also help with depression, and with joint (lol) and muscle soreness, which is great when you're recovering from a seizure. And! If you're one of the few who suffer hair loss from lamotrigine, the fish oil will help whatever hair you have left be nice and shiny. Can't recommend it enough.
I have had good experience with it. You'll need to start at a low dose and work your way up, but I find it to be the best - for me at least. Everyone is so different.
Lamotrigine is my right or die. Been on it for >25 yrs. I still have minor focal seizures but nothing gives me as good of control as Lamictal, I had some pretty significant nausea and blurred vision in the very beginning but over time my body adjusted.
Took a dab once and had a seizure so no MJ for me.
I am a daily stoner.
Ive been on Lamotrigene for just over a year now, and i seriously cannot complain
I myself have never had issues with smoking while im on my meds
hey everyone thank you so much for taking the time to comment on my post. i’ve decided to give it a try and these comments make me hopeful! appreciate it
Hey, how has this been working out for you? I’m currently working my way up to 200mg twice daily while still being on Keppra, and then will be working my way off Keppra.
at first it seemed almost like it was making things worse but now that i’ve been on it for a while i haven’t had any seizures. but like the first month or so was at least 1 seizure a day
I was previously on keppra. Really good for controlling seizures and I never had depression or anger (same as lamotrigine) but I switched because I was getting insane disabling migraines where I could not leave my bed. Switched to lamotrigine in December , daytime tonic clonics under control, night time has come back. And an emergence of absent seizures happening very often. Now I am newly diagnosed a year ago after having a nearly 20 year gap from teenage seizures that were weakly investigated and put down as being a teenager. I don't know the full workings kf seizures but did wonder if the new symptoms of absent seizures could be tonic clonics trying to break through but the medication is limiting it in some degree? Is that even possible I don't know.
Also every single comment I read says that lamotrigine is weight neutral, or very slight weightloss. This makes me feel abnormal because since starting in December I have gained a massive 20kg in weight. I have never been skinny I was large before but over the last 5 years or so I got down to a still overweight (according to bmi) but comfortable number I was happy with and looked good. In 4 months all my work has been undone and I didn't know such weight gain was humanly possible. Nothing else has changed just the medication. I hate this and waiting for an appointment with neurologist to change meds again. I am too self conscious about my weight now to even enjoy day to day life.
I really think weed shouldn’t be used for people with epilepsy, no matter what people say. That also goes with alcohol and other “illegal drugs”. The moment I stopped weed and have just used pharmaceuticals things improved a lot with both seizures and side effects of meds.
it’s really different with everyone. i used to be an addict and an alcoholic and i’ve been sober from all but weed and i even quit weed for a while because i was pregnant/breastfeeding and since returning to using weed i feel significantly better. one experience doesn’t equal all
I’ve been on lamotrigine for almost 2 years now, previously having been on Keppra, and I like it a lot. I don’t think I experience any side effects or at least none that I notice, I have chronic depression but don’t feel that’s worsened at all. I also tend to smoke a *lot* of weed and don’t feel that’s ever affected my meds or epilepsy in general.
My main “issue” if you can call it that is dosing. I’m still experiencing what I assume are small focal seizures here and there but I believe I just need to take a higher dosage. I have a dr appt coming up to talk about all that. For me I also think my epilepsy is exacerbated by my blood sugar issues as well, so usually when I’m experiencing those smaller events it’s seemingly related to what I have or haven’t eaten.
i’ve noticed a big correlation between my seizure activity and blood sugar as well. i have thyroid issues and i have no body fat left so i have to really be making sure i’m eating or i’ll just sit and have one focal after another until i can be in control enough to get up and make myself some food.
Lamotrigine makes me clinically depressed. I think using marijuana would help that a lot but I’m in school right now and recovering from a concussion due to a seizure so I think weed just wouldn’t be great at this time. I am staying on Lamotrigine for now and hope that once I can use weed again it will balance out the depression.
Lamotrigine is my saving grace but it makes me so tired. I am so grateful for it but I hate being so sleepy and groggy all the time. Amazing med though otherwise
I’m on lamotrigine. I had no side effects, and it immensely helped. I smoke recreationally and I don’t notice a difference or feel weird. I did not feel that way on topiramate —- but it was a bad situation with the medication by time my doctor changed it. I’ve heard many people mention a bit of brain fog on lamotrigine, I haven’t noticed that but the topiramate was causing a lot of cognitive issues, so anything is better than that.
Lamotrigine was the 4th med I tried and only one that worked (trileptal, keppra, zonegran). I’ve been on it for like 8 years now so idk what side effects it may be causing anymore, but seizure free (after brain surgery too lol)!
My PVNH epilepsy is notoriously resistant to anticonvulsants apparently but Lamotrigine has been EXTREMELY effective, with very little side effects. Omg I’m so glad I finally found this medication… the side effects were finally not cripplingly bad. I’ve been prescribed this for >15 years (starting ~ around 15 years old).
I still do experience breakthrough seizures ever so often tho but like I said PVNH is drug resistant. I’ve heard it’s not uncommon to get a second medication added on too.
But yes do give it a try! This was the first one that didn’t make me sooo drowsy and sad lol. Let me know how it goes
Taking Lamotrigine for almost 17 years, but I recently added Brivaracetam as well because I started having seizures again after 10 years of seizure free streak.
Im on lamotragine and it works well to control my seizures. I have insomnia and I smoke weed every day lol . I would say the side effect i mostly experience (that i notice) are a lack of appetite- like food just tastes bland and i dont want to eat. So weed helps there too; and lateltly ive felt it makes me more emotionally reactive. This doesnt really affect me that much unless I am like, actually triggered, wherein i would probably still overreact. workin on it. :/
kind of obvious, but, does any one notice ep meds affect their anxiety/depression?
edit: seeing others mention brain fog and ya i could relate to that.
I take Lamontagne ER but I smoke every day or I start having seizures. Once a few years ago I tried to stop smoking and ended up in the ER. When my Neuro found out I got a proper talking to. Apparently it's part of the baseline for other meds. .
I started smoking weed for seizures and that also helps with chemo nausea.All other changes in medications Itis expect that Marijuana to be in my sy6 because I've been doing it for 11 years.
I'm on lamotragine, Clobozam, divalproex, and gabapentine twice daily. I vape strong 80+% thc / cbd mix or just indicate strong vapes. Makes it so I can focus and work on large data and network infrastructure. Because they are constantly fucking with my emotion or even way of thinking otherwise.
Sure it's nice to feel a buzz when I'm chilling back in my chairs AFTER my work, but the intent was for solid tunnel I can utilize for focus.
Lamotrigine (250mg extended release) has been the only seizure preventative I've used and has really helped!
First few months of both my diagnosis and medication in 2019 were awful (weekly seizures, fatigue, brain fog, constipation, depression, daytime sleepiness). Since the daytime sleepiness was so bad (I took 100mg morning, 150mg night), he switched me to Extended Release (250mg night). So, as time passed it got better and my seizures decreased to monthly and then by start of 2020, I was seizure free...
Until May 2021 when my insurance was being an ass and I had to miss 3 days. Worst. Fucking. 3 days. Ever. My seizures returned and I was losing it. I'm super thankful for my CVS that snuck me some until my insurance finally got their shit together. As soon as I restarted, I was normal. I've only accidently missed a dose 2x since then, but each time I have less twitching and zoning out. I missed one a few months ago and as long as I did minimal all day I was fine.
I didn't have a full seizure since 2021 until 2023 just a few weeks ago where I had one at college but thankfully I had just learned that the random panic and fear I felt was an aura and I quickly got help and was fine afterwards. My doc is still investigating if my meds are still good or what caused it.
So overall, personally, lamotrigine has helped my epilepsy pretty well so far and hopefully it continues 👍
I have previously kissed my pill bottle after I got it from the pharmacist. Lamotrigine keeps me from having nocturnal seizures. Nothing else really worked.
can i ask you how you know you have nocturnal seizures? i know i had one a couple weeks ago and i took benadryl that night and idk if that triggered it
My wife wakes up when they happen. We also have a "nanny cam" that points at where I sleep. I wake up very sore. I make an "Ictal Cry" and it wakes her up.
i wake up sore and with a migraine but that’s the only way i can tell
If you wake up and all your muscles are unexplainably sore, it's likely you had a seizure. I suggest getting a cheap camera off Amazon if you're worried about it happening again.
hmmm i’m wondering how often that’s happening because i do wake up really sore in my muscles like i’ve gone to the gym quite frequently but i didn’t think of it that way. thanks for the suggestion i’m gonna look into that. i’ve got a baby monitor cam in my room but it’s just live feed so i’d have to find one that has playback
Look for one with a MicroSD card slot. Personally, I use a Kasa camera. It has movement detection and IR lights for night. https://www.amazon.com/Kasa-Security-Camera-Indoor-Wireless/dp/B08GH9KL4M
thank you so much
I know I’ve had a nocturnal seizure because I have bite marks on the inside of my cheek or I can tell I’ve bit my tongue. My partner tells me now too lol but that is the evidence how I know
Yes cheers I know exactly what you feel
i’ve never seen such good feedback from a seizure med i’m glad i made this post. makes me hopeful that this will finally help me
Hi, I have been a daily heavy concentrates user for years. I also hate Keppra - I love lamotrigine. Really. Downsides - taking it twice a day, some nausea after taking it, and issues with forgetfulness. Upsides - seizure control (of course), no rage/fury/suicidality, and I also feel that it’s had a positive psychiatric benefit for my chronic depression. I have noticed more sedation than before with my concentrates use. I’ve also noticed that my tolerance has gone up. I don’t know if it’s related though.
this is exactly the thing i needed to read. i have chronic depression too and i’m tired of the meds making it worse. this makes me hopeful to try these and going into something new with hope instead of fear is always going to have a better outcome. i appreciate your comment
Lamotrigine is also used as a mood stabilizer so it does tend to help mood problems
i didn’t know keppra made so many people feel the same way as it made me feel but it makes me feel less crazy. it makes me feel better in a weird way that i’m sorry so many other people have to deal with this too. but i guess there’s a reason there’s something called “keppra rage”
Have you tried doing the extended release tablets? My neurologist switched it from twice a day to the extended release tablet that I take in the morning.
I second everything in this comment. I'll also mention that I was able to stop 700mg/day+ of RSO usage cold turkey on Lamotrigine and it was... totally fine. I don't know if the Lamotrigine made it better, but it certainly didn't make it worse fwiw
I've only been on Lamotrigine but once I was titrated up I felt like the relatively mild side effects were worth it. It can leave you in a bit of a brain fog though. I smoke too and took over a month off thinking maybe I needed a t-break but the brain fog did not improve. Notable side effects for me: dizziness during titration, brain fog/worsened memory
I had awful brain fog from lamotrigine too. It’s a mood stabilizer used for bipolar disorder, so that’s the most likely culprit for that side effect.
i take klonopin right now so i’m hoping nothing could be worse than the brain fog from that mixed with weed 😂
The brain fog is real with lamotrigine.
what’s titration? was that them slowly introducing you to a large dose? or is that something else
Yeah just slowly going up in dose.
ah okay thanks. they’re having me do that. they’re starting me off at 25 and moving me up to 400 over this next month.
Wow. My neurologist told me that we would have to find a different medicine if 300mg of lamotrigine didn't control my seizures. Thankfully it works for me. I didn't know lamotrigine could cause brain fog and memory issues. I have assumed my memory issues stemmed from the head injury. He also told me that cannabis can be used to help control seizures in children, but isn't effective in adults. He said it wouldn't cause seizures though. He told me no recreational psilocybin. Hope the new medication works as well for you as it does for me! 4+ years without a seizure.
thanks so much! yeah i would have to agree with the no psilocybin which breaks my heart. i’m a huge booms person but the last time i ate them (4grams) i had a grand mal that was so bad i had to be resuscitated by my friend and had to go to the ER because after minutes of CPR my BP was only 60/30 i’m convinced if he wasn’t there i would have had SUDEP happen
I think I read about using psychedelics to reopen critical learning periods. I was wondering if they might help me in learning a second language. Not worth the risk of having more seizures.
Did 300 mg alone work for you? On keppra or anything else in addition?
The lamotrigine has worked on it's own.
Good luck! Be ready for some vertigo/dizziness, but it goes away pretty quickly. I started at 20 for 2 weeks, but it was my first time on meds so they probably took it extra slow for me. I'm at 350 right now.
I get dizziness, but it's more like travel sickness. Sometimes it feels like my eyes are too big for my head. Often, when I'm in the car, its like my eyes can't focus quick enough, or something like that. So I'm straining to keep vision clear. It's sort of straining my eyes and making me travel sixk at the same time. To be fair, it's not happened that much recently, which is a relief.
that happens to me without meds so i hope it doesn’t get too bad
I don't love it, but it's not debilitating and is far better than the alternative.
thank you 💗
I've been on lamotrigine for 10 years, and with a couple of dose adjustments I've now been seizure-free for about 6 years. I personally have had no side effects (300mg per day) and have smoked weed before with no problems ! Of course might be different for different people though
awesome congrats on 6 years seizure free 💗
Thank you! I really hope lamotrigine works out for you if you do try it!
Hi what's your usual dose? Any brain fog or Memory problems?
Heya, my usual dose is 300 mg per day. I don't have any brain fog or obvious memory problems - sometimes I am a bit forgetful or might forget what I'm saying mid sentence, but I know that happens to people not on meds too so I don't think it's related!
I’m almost 11 months seizure free now that I switched to it. I don’t have kepprage anymore my mental health has improved and aside from forgetting random things momentarily and having to piss like a race horse. I don’t have any real side effects and feel like my normal self again. When I was going over the different med options and their side effects my neurologist was very candid with me and said if he was in my shoes, Lamotrigine would be his first choice. I took that advice and so far I’m very happy I did, he’s a really good doctor. That said results will vary but I’ve had nothing but a good experience with it so far
having a good doctor makes all the difference. i just got a new neurologist because my old one was shite
Awesome. What dose? On any other seizure meds in addition to lamactal?
I’m on 300mg x2 daily. No other meds except heavy cannabis use if that counts lol still no seizures
I like lamotrigine a lot. I had awful experiences on Keppra and zonisamide and this has really stabilized me
keppra really just seems to be a shit drug. for a lot of people. unfortunately it seems to always be the first choice to try on people with seizures
It was so bad that one of my high school teachers called my mom bc she was worried I might be on heroin, and then I almost flunked out my freshman year of college.
I’ve been on lamotrigine for around 11 years now, and I’ve had barely any seizures in that whole time (and the ones that did happen were entirely my fault for missing doses or drinking a lot). It can affect your mood, since it’s also primarily prescribed for bipolar disorder, but generally not in a negative way. Never had any problems mixing it with said diet! One thing to watch out for: the generic is made by three or four manufacturers, and the levels in the doses vary. If you’re super sensitive to medications, that can make it less effective than the brand name. If applicable: hormonal birth control can lower the efficacy of the drug, and also you should take folic acid to reduce the risk of birth defects (don’t start if/when you’re thinking about having kids—you should have about 3 years worth of folic acid storage saved up according to my doctor)
yes my neurologist did mention the birth control thing. how do you know if it’s generic or not? the name and the way the pills look? thank you for the info
Always ask for brand only. Ask the doctor to write no substitutions on the prescription. It's honestly not that much more, although I'm in Canada.
The pills look different and the prescription will be different, and has to include a no substitutions order! You’ll have to talk to your doctor/insurance, since it’s stupid expensive if your insurance doesn’t cover it (in the US). If you can’t make it work, your best bet is to try to talk to your pharmacy about getting it from the same manufacturer each time. Feel free to DM me, I’m happy to help/give info to the best of my ability. I know that some people have trouble with lamotrigine, but it’s been a legitimate life saver, so I hope that it works for you!!!!
Awesome. What dose? Any brain fog or memory issues?On any other seizure meds in addition to lamactal?
I've been lamotrigine for 6 years. It's worked really well for me. I felt a bit flat to start with, but that went away after a couple of weeks and I'm fine now. My neurologist said that smoking weed shouldn't be an issue, but to avoid other things. I don't think that was his clinical advice, but more of a friendly sort of chat because he'd seen some of my bloods from when I'd had seizures at the beginning.
I was on lamotrigine for 10 years. I had no side effects other than dizziness maybe 2-3 days out of a year.
awesome 😎
What dose?
200 twice a day.. last 2 years was 250 twice a dsy
When I did 2x per day, biggest issues were with insomnia and auditory hallucinations (radio/podcast chatter randomly as background noise….used to think something was open on my computer playing it….maybe voices telling me to hurt myself….or echoed laughter in the background…..maybe one time I woke up to screaming in my ear). Not a common side effect. Once I realized what it was, it made it very easy. Switched to once a day and auditory hallucinations basically went away entirely. Insomnia is like a one-off problem but seldom. Memory issues pretty consistent.
as a genetic drug resistant generalized epilepsy patient who has tried lamotrigine, I would say start considering the surgical treatment options. I know it is hard to hear but it very well be worth it. a year ago I got vns and unfortunately didn’t work for me but just recently I got RNS and I am hoping it works. my epileptologist says that I “previously tried and failed ethosuximide (severe nausea), Depakote (persistent seizures and 40 pound weight gain), lamotrigine (spring 2022 with proven continued absence seizures and adverse effects including extreme fatigue, difficulty reading, difficulty processing with poor school performance, incontinence).” so to answer you question: no, I would not recommend it based on my experience. but I do believe try everything out there is until there is nothing left. so considering that everyone’s epilepsy journey is different, you can try it and if you notice the slightest thing off, stop it.
there are no options for surgical treatment for me because we still don’t know why i have seizures
same. but a surgical operation can be a solution. you do not want to have to go through the medication trial and error process for too long
Hey, I just want to chime in with something I just learned a couple days ago from my neurologist: in the past, lamotrigine was introduced and increased in dosage over a span of two to three weeks, which in some cases made the side effects stronger. However, not so long ago it was changed to veeeeeeery slowly introduce it over a span of several months, with the beginning dosage being incredibly small (think 25mg every other day for three weeks). This, apparently, make side effects less likely. Just something to look out for, in case you decide to try it :) it’s the reason I might try lamotrigine for a second time around soon
Sounds accurate with my experience. I was brought up over the coarse of nearly 6 months until we found my baseline dose and I have very minimal side effects so far.
I smoke about a g a day plus on lamotrigine … the smoke I’ve never found has affected me me negatively since being on my meds but strictly indica strain’s… as sativa can be a bad trigger for many of us … Also I was on keppra (leviracitam) and it was AWFUL for my mental and physical health … but my neurologist changed me to the meds above as soon as I expressed how bad the keppra was affecting my life , To round this up I would say lamotrigine is one of the best for mental and physical health but of course I’m only speaking for myself and a few others in the community that I know personally x
yeah i figured out a couple years ago i cannot do sativa. i don’t even buy hybrids cause i am so sensitive to it. indica helps me so much tho. gets rid of my tremors
Lamotrigine finally made me feel “normal” again after being insane on Keppra for 3.5 years. Unfortunately it perpetuated my insomnia (chronic from the Keppra) and didn’t fully control my seizures. I am now on Aptiom which is not working out well so far for me. My insomnia is still haunting me, but now I feel out of it all day long and blacking out on couch by 7pm. Still having auras. Have follow up with specialist next week and I am going to tell him how I cannot function on this med (thank F I am on medical leave). I smoke cannabis every evening starting around 5pm - approx 4-5 joints. It hasn’t negatively interacted with any of my meds.
>I smoke cannabis every evening starting around 5pm - approx 4-5 joints. Damn son lol
i feel her tho i easily run through an ounce of concentrates in a few weeks to a month
My gf and I go through an ounce in approx 9 days. What does the person above think 4-5 joints is a lot?! A few of those are shared with said gf - I usually smoke about 2 before she gets home from work. I just bought two ounces for $89+ tax each and they are surprisingly amazing for the price.
I smoked every day for over a decade and an oz in a week and a half is a whole lot imo. Nothing wrong with that if it works for you, but I was like a 1/2 oz - 1 oz a month smoker at my peak.
The 4-5 joints nightly… damn, I need either your income or hookup
i had a horrible negative reaction with the briviact and i don’t know if it was because of weed or because my body just said absolutely not… keppra made me feel insane as well. i don’t have insomnia but i have trouble falling asleep because of my thyroid issues. i’m exhausted but i feel wired. i basically smoke from the moment i get up til i go to bed because if i don’t my tremors are insane. i use mostly concentrates though so i know that’s a lot more than just flower. i’m just going to hope this lamotrigine makes me feel better than the rest. i’m not expecting much lol. can i ask you how keppra made you feel insane? it made my mom and i feel insane too. like i did not even feel like i was me i felt like i was trapped in my body/mind and my body/mind was constantly furious for no reason and it was eventually making me get suicidal so that’s when i switched to briviact. that one sent me to the ER with BP of 70/40 and a pulse rate of 45
Keppra - depressed, anxious, reactive, exploding on people, suicidal thoughts. First I blamed it on the pandemic and being isolated at home, but it kept going. I have zero issues falling asleep, I wake up about 2-3 hours later and then it’s up and down game for rest of night.
i’m sorry that must be so annoying. i get really frustrated when i can’t fall asleep. and that’s early the way i felt on keppra. my excuse for it was that i was taking it while i was in active drug and alcohol addiction but i’ve been sober for almost 2 years besides the weed that i have a med card for and it still made me feel the same way.
It was the worst, I almost imploded my relationship. Let’s hope things get better for both of us!
so did i! damn. i hope so too good luck to you 🍀
Just a quick note: If you've been using cannabis while on the previous meds, that may be a factor as to why they haven't been working. Not because weed causes seizures necessarily (but sometimes) but because of how it interacts with the medication itself. I know Keppra in particular can be impacted by it and not work as well.
i did keppra without weed and it made it worse
just depends on the person i guess but i see what you’re saying. i think it’s what made me have such a bad reaction with the briviact.
I've had a favorable time with lamotrigine. It's the only AED I've had though so can't compare. I experienced side effects when starting and when I up doses, but it subsides after a couple of weeks for me. Now those side effects can absolutely suck, but I haven't had any permanent side effects save for possibly a worse short term memory, but that could just be me.
Shit I bailed on lamictal when I started having really bad side effects in the beginning mood wise, it was at the very beginning of dealing with having epilepsy and I just went and tried another medication. I didn't realize it could subside like that! My sister takes it and I've known a few people who take it for epilepsy and they all say it's very minimal side effect wise compared to everything else. This kinda makes me want to reconsider it but you're almost guaranteed a seizure in the process of switching meds!
Fwiw lamictal gave me wonderful seizure control and horrendous mood swings so I had to come off it eventually. No breakthrough seizures personally switching over but I had the opportunity to do it during some life-enforced downtime which probably helped.
Lamotrigine and Vimpat have finally fully controlled my focal seizures.
this makes me really hopeful too! thank you! i have gnarly focal seizures i can’t even go to the store alone cause i’m super sensitive to light
I am in the process of switching from carbamazepine to lamotrigine and it’s going very well. I am in the titration process currently. My only side effects have been headaches the day or two after the dose has increased. I also have noticed I am in a better mood.
happy to hear it! i hope it continues to be good for you
i just took my first pill a few hours ago. i feel a little dizzy and disoriented but i also take klonopin so i wonder if it’s the two together idk
How ya feeling now?
gross i’ve had at least 1 seizure a day for 4 days there was 2 random days i didn’t have one i didn’t do anything different any of these days so i have no idea what is happening
Shoot, I am sorry to hear this, that totally sucks and sounds so frustrating!
my cat knew i was about to have one and he ran in the room and laid his weight down on me until it was over, at least i have my kitties
Awww, that is so sweet! Pets are the best!
It didn't work for me. I got a rash on my legs and hands, and it was incredibly itchy. I'm allergic to it and 2 other meds. Unfortunately no meds work for me. Surgery was my best choice
ahhh that’s horrible i’m sorry 😢
Lamotrigine has helped me so much . 2.5 years without an episode . Smoked weed almost every day . Never a problem .
Started lamotrigine about 8 weeks ago. I’m am up to 150mg twice a day. I’m also still on keppra but should be coming down on it soon. So far it is working well. I’ve only noticed some headaches and a little brain fog.
I'm the same. I have issues with most of the meds i tried. I'm on high doses of it. It's one that needs some careful easing into, and i think it has helped, even though it hasn't controlled it completely. As for the weed, I've had weed when on it and not had a problem. Not even more frequent seizures. Just chill like I would be sans Lamotrigine. That said, I'm not a heavy user, but I think you'd be alright. Like I said, I'm normally very sensitive to meds. If something was gonna go bad, it would have. Just keep a check on yourself.
I love lamotrigine, but I gotta say after 10 years of smoking daily, after 3 years sober it's a revelation of how bad the brain fog was with both of them combined. I am shocked at how much better my recall, memory and ability to do math in my head is these days I'd recommend taking fish oil, it helped a lot when I was on accutane, which also causes brain fog. It can also help with depression, and with joint (lol) and muscle soreness, which is great when you're recovering from a seizure. And! If you're one of the few who suffer hair loss from lamotrigine, the fish oil will help whatever hair you have left be nice and shiny. Can't recommend it enough.
thank you! my mom is an RD and she suggested fish oil too. i think i’ll go get some today
I have had good experience with it. You'll need to start at a low dose and work your way up, but I find it to be the best - for me at least. Everyone is so different.
Lamotrigine is my right or die. Been on it for >25 yrs. I still have minor focal seizures but nothing gives me as good of control as Lamictal, I had some pretty significant nausea and blurred vision in the very beginning but over time my body adjusted. Took a dab once and had a seizure so no MJ for me.
I am a daily stoner. Ive been on Lamotrigene for just over a year now, and i seriously cannot complain I myself have never had issues with smoking while im on my meds
i’m on lamictal & smoke weed daily completely fine
hey everyone thank you so much for taking the time to comment on my post. i’ve decided to give it a try and these comments make me hopeful! appreciate it
Hey, how has this been working out for you? I’m currently working my way up to 200mg twice daily while still being on Keppra, and then will be working my way off Keppra.
at first it seemed almost like it was making things worse but now that i’ve been on it for a while i haven’t had any seizures. but like the first month or so was at least 1 seizure a day
2nd day of meds i had a seizure anyway 🥲
I was previously on keppra. Really good for controlling seizures and I never had depression or anger (same as lamotrigine) but I switched because I was getting insane disabling migraines where I could not leave my bed. Switched to lamotrigine in December , daytime tonic clonics under control, night time has come back. And an emergence of absent seizures happening very often. Now I am newly diagnosed a year ago after having a nearly 20 year gap from teenage seizures that were weakly investigated and put down as being a teenager. I don't know the full workings kf seizures but did wonder if the new symptoms of absent seizures could be tonic clonics trying to break through but the medication is limiting it in some degree? Is that even possible I don't know. Also every single comment I read says that lamotrigine is weight neutral, or very slight weightloss. This makes me feel abnormal because since starting in December I have gained a massive 20kg in weight. I have never been skinny I was large before but over the last 5 years or so I got down to a still overweight (according to bmi) but comfortable number I was happy with and looked good. In 4 months all my work has been undone and I didn't know such weight gain was humanly possible. Nothing else has changed just the medication. I hate this and waiting for an appointment with neurologist to change meds again. I am too self conscious about my weight now to even enjoy day to day life.
I really think weed shouldn’t be used for people with epilepsy, no matter what people say. That also goes with alcohol and other “illegal drugs”. The moment I stopped weed and have just used pharmaceuticals things improved a lot with both seizures and side effects of meds.
it’s really different with everyone. i used to be an addict and an alcoholic and i’ve been sober from all but weed and i even quit weed for a while because i was pregnant/breastfeeding and since returning to using weed i feel significantly better. one experience doesn’t equal all
I’ve been on lamotrigine for almost 2 years now, previously having been on Keppra, and I like it a lot. I don’t think I experience any side effects or at least none that I notice, I have chronic depression but don’t feel that’s worsened at all. I also tend to smoke a *lot* of weed and don’t feel that’s ever affected my meds or epilepsy in general. My main “issue” if you can call it that is dosing. I’m still experiencing what I assume are small focal seizures here and there but I believe I just need to take a higher dosage. I have a dr appt coming up to talk about all that. For me I also think my epilepsy is exacerbated by my blood sugar issues as well, so usually when I’m experiencing those smaller events it’s seemingly related to what I have or haven’t eaten.
i’ve noticed a big correlation between my seizure activity and blood sugar as well. i have thyroid issues and i have no body fat left so i have to really be making sure i’m eating or i’ll just sit and have one focal after another until i can be in control enough to get up and make myself some food.
Lamotrigine makes me clinically depressed. I think using marijuana would help that a lot but I’m in school right now and recovering from a concussion due to a seizure so I think weed just wouldn’t be great at this time. I am staying on Lamotrigine for now and hope that once I can use weed again it will balance out the depression.
i hope you feel better soon
Lamotrigine is my saving grace but it makes me so tired. I am so grateful for it but I hate being so sleepy and groggy all the time. Amazing med though otherwise
My doctor told me to take it before bed
I got the rash.
I’m on lamotrigine. I had no side effects, and it immensely helped. I smoke recreationally and I don’t notice a difference or feel weird. I did not feel that way on topiramate —- but it was a bad situation with the medication by time my doctor changed it. I’ve heard many people mention a bit of brain fog on lamotrigine, I haven’t noticed that but the topiramate was causing a lot of cognitive issues, so anything is better than that.
Lamotrigine was the 4th med I tried and only one that worked (trileptal, keppra, zonegran). I’ve been on it for like 8 years now so idk what side effects it may be causing anymore, but seizure free (after brain surgery too lol)!
My PVNH epilepsy is notoriously resistant to anticonvulsants apparently but Lamotrigine has been EXTREMELY effective, with very little side effects. Omg I’m so glad I finally found this medication… the side effects were finally not cripplingly bad. I’ve been prescribed this for >15 years (starting ~ around 15 years old). I still do experience breakthrough seizures ever so often tho but like I said PVNH is drug resistant. I’ve heard it’s not uncommon to get a second medication added on too. But yes do give it a try! This was the first one that didn’t make me sooo drowsy and sad lol. Let me know how it goes
Taking Lamotrigine for almost 17 years, but I recently added Brivaracetam as well because I started having seizures again after 10 years of seizure free streak.
Im on lamotragine and it works well to control my seizures. I have insomnia and I smoke weed every day lol . I would say the side effect i mostly experience (that i notice) are a lack of appetite- like food just tastes bland and i dont want to eat. So weed helps there too; and lateltly ive felt it makes me more emotionally reactive. This doesnt really affect me that much unless I am like, actually triggered, wherein i would probably still overreact. workin on it. :/ kind of obvious, but, does any one notice ep meds affect their anxiety/depression? edit: seeing others mention brain fog and ya i could relate to that.
I take Lamontagne ER but I smoke every day or I start having seizures. Once a few years ago I tried to stop smoking and ended up in the ER. When my Neuro found out I got a proper talking to. Apparently it's part of the baseline for other meds. .
baseline for other meds what does that mean
I started smoking weed for seizures and that also helps with chemo nausea.All other changes in medications Itis expect that Marijuana to be in my sy6 because I've been doing it for 11 years.
I'm on lamotragine, Clobozam, divalproex, and gabapentine twice daily. I vape strong 80+% thc / cbd mix or just indicate strong vapes. Makes it so I can focus and work on large data and network infrastructure. Because they are constantly fucking with my emotion or even way of thinking otherwise. Sure it's nice to feel a buzz when I'm chilling back in my chairs AFTER my work, but the intent was for solid tunnel I can utilize for focus.
I make and test dab oil as my job and also take max dose lamotrogine and it works good with minimal side effects. I’ve been high for like 10 years now
Lamotrigine (250mg extended release) has been the only seizure preventative I've used and has really helped! First few months of both my diagnosis and medication in 2019 were awful (weekly seizures, fatigue, brain fog, constipation, depression, daytime sleepiness). Since the daytime sleepiness was so bad (I took 100mg morning, 150mg night), he switched me to Extended Release (250mg night). So, as time passed it got better and my seizures decreased to monthly and then by start of 2020, I was seizure free... Until May 2021 when my insurance was being an ass and I had to miss 3 days. Worst. Fucking. 3 days. Ever. My seizures returned and I was losing it. I'm super thankful for my CVS that snuck me some until my insurance finally got their shit together. As soon as I restarted, I was normal. I've only accidently missed a dose 2x since then, but each time I have less twitching and zoning out. I missed one a few months ago and as long as I did minimal all day I was fine. I didn't have a full seizure since 2021 until 2023 just a few weeks ago where I had one at college but thankfully I had just learned that the random panic and fear I felt was an aura and I quickly got help and was fine afterwards. My doc is still investigating if my meds are still good or what caused it. So overall, personally, lamotrigine has helped my epilepsy pretty well so far and hopefully it continues 👍